Facebook

March 22, 2009

Ian, thanks for all your interest and involvement in the PSC group.

I am on facebook and would like to be included in the group.

Hope you are having a great day.

Geraldine Newell

To: < >Sent: Sunday, March 22, 2009 5:40:47 PMSubject: PSC & Facebook PROFILE PHOTOS

I want to encourage the members of this support group to get a facebook account and get to know some of the other members better. I now have 126 members of the support group has FB friends and I feel I know them better. For any new member (or any member at all) the attached picture is a collection of members that gave me permission to pass their names about this group and are willing to accept friendships from other members of the support group. If anyone wants to be added (or removed) from the list please let me know.

Ian (52) PSC 89

---------- Forwarded message ----------From: Ian Cribb <icribb (AT) gmail (DOT) com>Date: Feb 8, 2009 8:56 PMSubject: Fwd: PSC & Facebook PROFILE PHOTOS Jan 18,2009To: <@ yahoogroups. com>

The last couple of weeks have been slow for me on the facebook side of things. I have only added 3 PSCers and are now up to 104 PSCers in my friendship list. If any of you PSCers want to join facebook its free and a great way to get to know other PSCers better. The people on the attached list have given me permission to pass their names about to other members of the support group and are willing to accept your friendship.

Ian (52) PSC 89

---------- Forwarded message ----------From: Ian Cribb <icribb (AT) gmail (DOT) com>Date: Jan 27, 2009 8:22 PMSubject: Re: PSC & Facebook PROFILE PHOTOS Jan 18,2009To: <@ yahoogroups. com>

I've identified 118 members of this group that have Facebook profiles, 101 of which are within my "friendship list". In the attached picture are picture are 42 profile photos of people who have given me permission to pass their names around to other PSCers. There are other members of this support group that have facebook accounts but use a different email account for that and so I haven't been able to search you out. If you wish to be able to associate a face with a post feel free to request friendship from any of the people on the list. This is not a closed group (it is open to any PSCer), You can request friendship from any of these people without getting onto this list or being my even being on my friendship list. You can seek me out using my

email address and view my friends all of the people on this list can be found within my friendship list.

Ian (52) PSC 89

Ian

I've identified 108 members of this group that have Facebook profiles, 87 of which are within my "friendship list". In the attached picture are picture are 35 profile photos of people who have given me permission to pass their names around to other PSCers. There are other members of this support group that have facebook accounts but use a different email account for that and so I haven't been able to search you out. If you wish to be able to associate a face with a post feel free to request friendship from any of the people on the list.

Ian

I've identified 94 members of this group that have Facebook profiles, 75 of which are within my "friendship list". In the attached picture are picture are about 30 profile photos of people who have given me permission to pass their names around to other PSCers. There are other members of this support group that have facebook accounts but use a different email account for that and so I haven't been able to search you out. If you wish to be able to associate a face with a post feel free to request friendship from any of the people on the list.

Ian-- Ian Cribb P.Eng. (60... -- Ian Cribb P.Eng. (6...

-- Ian Cribb P.Eng. -- Ian Cribb P.Eng.cell: Enefen - Reviewer/Designerwww.enefen.com

March 22, 2009

On Facebook you can search my email address (icribb@gmail) the same email at is attached to all my posts to the support group. Sandi has used a different email address for facebook so try searching by her name (Sandi Pearlman). It gives two options, one only has three friends and no profile picture, the one with lots of friends (nearly 200) is her! Or if you are my friend you can find her in my friendship list (they are alphabitical by last name). or search (leigh@...) and you will find her.

Ian

Hi, all! :)I just wanted to clear up some confusion that seems to have sprung up and that I'm getting quite a few questions on. What Ian is writing about and asking people to join is not an official PSC Facebook group. He's simply asking others to " friend " him and other PSCers who contribute on this board. It's a great idea and a fun way to get to know others, but it is not a group, per se. We do however have some official Facebook Groups. For any and all of you who are Post-Transplant, there is a Post-Transplant PSC Group. If you type in " PSC Liver Transplant Support Group " in the search box on Facebook, you'll be taken right to the post-transplant group and if you type in " PSC Partners Seeking a Cure, " it'll take you right to our 20s/30s (and around there!) Facebook Group.

Does that make sense to everyone?So, while you're all logging on to " friend " Ian (and hopefully me, too!), make sure you check out what's going on in the world of PSC Support Groups on Facebook!

Hope you all are having great days!Sandi in VA/Rochester

> > > I've identified 94 members of this group that have> Facebook profiles, 75 of which are within my> " friendship list " . In the attached picture> are picture are about 30 profile photos of people who have

> given me permission to pass their names around to other> PSCers. There are other members of this support group> that have facebook accounts but use a different email> account for that and so I haven't been able to search

> you out. If you wish to be able to associate a face> with a post feel free to request friendship from any of the> people on the list.> > Ian> > > > -- > Ian Cribb P.Eng.

> (60... > > > > -- > Ian Cribb P.Eng.> (6... > > > > -- > Ian Cribb P.Eng.> (604) 862-7247 > > > -- > Ian Cribb P.Eng.

> cell: (604) 862-7247 > Enefen - Reviewer/Designer> www.enefen.com> > >

> > > > > > > > > > > > > > > > > > > > > > > > >

> > > > > >

-- Ian Cribb P.Eng.cell: (6...Enefen - Reviewer/Designerwww.enefen.com

March 23, 2009

Well said Don! I too have a bit of

the fuddy factor. Sometimes there is just too much information to digest.

I do value the information that I receive and the sharing from everyone

involved in the group, but Facebook puts things into another dimension that I

am not comfortable with at this time.

From: [mailto: ] On Behalf Of Don Nygaard

Sent: Monday, March 23, 2009 10:03

AM

To:

Subject: Re:

Facebook

I joined Facebook a while ago, but I couldn't see the point of it all

March 23, 2009

Well said Don! I too have a bit of

the fuddy factor. Sometimes there is just too much information to digest.

I do value the information that I receive and the sharing from everyone

involved in the group, but Facebook puts things into another dimension that I

am not comfortable with at this time.

From: [mailto: ] On Behalf Of Don Nygaard

Sent: Monday, March 23, 2009 10:03

AM

To:

Subject: Re:

Facebook

I joined Facebook a while ago, but I couldn't see the point of it all

March 23, 2009

Well said Don! I too have a bit of

the fuddy factor. Sometimes there is just too much information to digest.

I do value the information that I receive and the sharing from everyone

involved in the group, but Facebook puts things into another dimension that I

am not comfortable with at this time.

From: [mailto: ] On Behalf Of Don Nygaard

Sent: Monday, March 23, 2009 10:03

AM

To:

Subject: Re:

Facebook

I joined Facebook a while ago, but I couldn't see the point of it all

March 23, 2009

Including Don there are 4 members of this support group that were on my friendship list for a while, but have dropped me (2 that left facebook all together). I do appreciate having them as a FB friend for a while and getting to know them better. I still feel I can relate to them better when any time they post. Carolyn I propose that we become friends for a short while so we can get to know each other better?

Ian

I joined Facebook a while ago, but I couldn't see the point of it all, so I quit after a month. Of course, the fuddy factor is a problem. With the two PSC groups, I have lots of information to digest.I do like the new eTransplant Cafe. It is organized well, and has groups for all kinds of transplants, plus users of the various meds, and etc. It's quite amazing what a young guy has put together after his liver transplant.

Flickr is the best thing on the internet, I think, for anyone who ever shoots a digital photo, which must be everybody by now. It serves the purpose of a social network very well because it is based on something beside " friend " liness. (Excuse my sarcasm.)

Speaking to a high school class about Organ Donation the other day, I asked the kids about Spacebook and Myface, etc. They were very indulgent. Their teacher evidently had warned them to be kind. I remember when we used to stand in front of the neighbor's front window in the evening to watch the new technology--TV.

-- Ian Cribb P.Eng.cell: (6...Enefen - Reviewer/Designerwww.enefen.com

March 23, 2009

Including Don there are 4 members of this support group that were on my friendship list for a while, but have dropped me (2 that left facebook all together). I do appreciate having them as a FB friend for a while and getting to know them better. I still feel I can relate to them better when any time they post. Carolyn I propose that we become friends for a short while so we can get to know each other better?

Ian

I joined Facebook a while ago, but I couldn't see the point of it all, so I quit after a month. Of course, the fuddy factor is a problem. With the two PSC groups, I have lots of information to digest.I do like the new eTransplant Cafe. It is organized well, and has groups for all kinds of transplants, plus users of the various meds, and etc. It's quite amazing what a young guy has put together after his liver transplant.

Flickr is the best thing on the internet, I think, for anyone who ever shoots a digital photo, which must be everybody by now. It serves the purpose of a social network very well because it is based on something beside " friend " liness. (Excuse my sarcasm.)

Speaking to a high school class about Organ Donation the other day, I asked the kids about Spacebook and Myface, etc. They were very indulgent. Their teacher evidently had warned them to be kind. I remember when we used to stand in front of the neighbor's front window in the evening to watch the new technology--TV.

-- Ian Cribb P.Eng.cell: (6...Enefen - Reviewer/Designerwww.enefen.com

March 23, 2009

Ian (and others),

Hi! Actually, there's a way to control the picture viewing under settings.

When setting up an album, if you choose ONLY FRIENDS, then nobody else has

access to your information or pictures. Even if a mutual friend comments, you

won't be able to see the entire album.

As to talking about PSC in a " public " forum such as Facebook, Ian is right. On

FB, you can choose to keep things private by using the " message " feature instead

of the " wall " or " comment. " If you do this, your communications are as private

as they would be when you receive a regular e-mail in your in box. Like Ian

also said, I have a lot of PSCers on my Facebook friends list and I'm so glad to

know them and chat with them all and lucky to have them as my friends. I also

have a lot of non PSCers as Facebook friends and love them every bit as much.

If someone was to look at my page or my " friends, " they wouldn't be able to tell

at all who was a " PSCer " and who wasn't.

Okay..all that being said, Facebook's not for everyone. I happen to love it but

it's just another tool out there in the big wide world of the internet to bring

us all closer together. Whether you decide to use it or not is up to you! If

you do decide to use it, great. If you don't, well that's okay, too!

Sandi in VA/Rochester (who is currently drugged and feeling about the worst I

have in months and totally sleep-deprived...so please forgive me if this message

doesn't come out right or makes no sense!) LOL

March 23, 2009